[Kenan White]

So I am MDS with ring sideroblasts – are you both as well?

It’s such a perplexing and frustrating disease and we only have one choice which is to move through it but there are many reasons to be hopeful 🙏

[Kenan White]

I can only share my experience which is very similar – started summer of 2022 and the side effects were worse than those felt with anemia – horrible pain, nausea and fatigue worse than when my counts were at my lowest – but feeling like I had no choices I kept up with it and tried to keep up with the good habits I’d learned re eating sleeping and exercise – still had bouts of low counts but did gradually get to a point of 6 months transfusion free – the side effects are much better but it took 6 – 8 months at least – and 16 months I still have challenges and have had transfusions but am not going to stop – I’m going to go to the highest dosage soon – good luck to you and would you share what you are doing now instead of Luspatercept?

[Kenan White]

Check with your doc – I skipped a week here and there for travel with no issues until my numbers weren’t responding as well and missing a week wasn’t a good option – we need to enjoy life and a cruise sounds like a perfect escape – good luck!

[Kenan White]

John! In addition to healthy living I’d say your sense of humor and optimism have been a help! Yes please do keep us informed re your progress and best of luck with all of your challenges. It’s such a rare and complicated disease and helps to hear what others are experiencing so thank you 🙏
I’m very grateful that my current protocol is working and I’ve managed to average 7.5 and 3 transfusions in 3 years – 2nd opinions at J Hopkins and Dana F conclude with local doc and like you, I’ve been living a pretty healthy lifestyle as that’s about the only thing I can control! Lucky enough to retire and honestly living a pretty fulfilling life in spite of MDS – look forward to more good news about Luspatercept-BTW are you MDS with ring sideroblasts?

[Kenan White]

Very good news and congrats! So glad you shared your experience and have just heard panel discussion with MDS docs and the general opinion is that it’s better to start Luspatercept before getting dependent on transfusions. I’ve had 3 since 2018 so think I’m going to stick with Procrit regime until numbers head south. What were you doing before Luspatercept?

[Kenan White]

Peggy – what is your diagnosis? Wondering if you are MDS-RARS?

[Kenan White]

I have weights and a bench at home – I’ve also joined an online fitness program for both nutrition and exercise – just gives me a little control and that feels good as I need to feel in control of something

[Kenan White]

Of course, this is an individual decision but since you asked … no cure doesn’t mean no life. There are many options (and more coming down the pipeline) and if you have a good doc and you are getting good advice, then those options should be laid out for you. I was diagnosed 2 years ago, but like most of us, probably have lived with it for much longer. I’m low risk right now, and am on a protocol of Procrit and Zarzio each week. I’ve worked to stay away from transfusions; I am female, and my RBC hovers around 7.5 which allows me to live a pretty decent life. And LIVING means a lot to me – I’ve definitely cleaned up my act and am probably in the best shape I’ve been in since passing the 50 mark … 12 years ago. Eat well, sleep well, exercise and do a lot of ‘head work’. It’s such a confusing and complicated disease and it really requires you to do your homework and you need to stay on top of docs and get a lot of opinions … I’ve been to Dana Farber and to John’s Hopkins just to get a second and third opinion. Talk is cheap if you have insurance, so make sure to be your advocate. This forum helps too and I take advantage of all of the opportunities to hear from experts – wishing you well and hoping that you will take the bull by the horns, so to speak 🙂

[Kenan White]

Wow! What a great response; so glad that it’s working and can’t imagine how GOOD you must feel. I’m hovering at about 7.5 with Procrit and have decided to ride it out as it is working for me. I can live a pretty decent life with those numbers, as long as I keep myself in shape and take care. Please keep up the good news – it’s a hope story.

[Kenan White]

Gladys: Thanks for the very helpful information. I was diagnosed 2 years ago, in the summer of 2018, although looking back I think I’ve had it for quite a while. I’m currently on Procrit with a dose of Zarzio each week to boast the effectiveness of the Procrit. I ‘live’ in the 7.5 range, but for me, that is doable and am able to live pretty much like I want – no marathons but I’m not complaining. I’ve had one transfusion in the beginning when they were monkeying around with the Procrit and took me off for 6 weeks, but since then, I been able to avoid. My doc wants me to stay with this protocol until it stops working – wondering how you knew that Procrit had stopped vs a bit of a hiccup. I’m dreading the day when I go in and it’s obvious that we need to switch to a new protocol. Fingers crossed that the Luspatercept is your answer – it’s such early days right now for anyone to give definitive reviews. Keep us in the loop and best of luck. Stay safe.

[Kenan White]

Hello:
I’m anxious to know how you are responding to Luspatercept! I’m on Procrit, and have been for a year, but my RBC numbers are dropping – trying to avoid transfusions, but think that it’s inevitable so hoping for an alternative. Please give me an update if you don’t mind, and I am hoping you are well!

[Kenan White]

Best of luck with it and please update as you progress. It sounds like you have tried a lot, but in all those years, did anything work – for a while? Has your RBC always been that low? I have been gradually coming down but have held steady at 7.5 (average) with only one transfusion. But, I know this won’t last and would love to know more about your ‘journey’.

[Kenan White]

Thanks for the update – it sounds as if it’s working. Prior to Luspatercept, what were you doing – transfusions? Did you ever use Procrit? I was diagnosed 2 years ago, low risk, and my numbers average around 7.5. I am on weekly Procrit and Zarzio injections – holding steady. Have only had one transfusion in November. I’m always looking for the other shoe to drop, and with so few options, I’m reluctant to give up this regime for one that may not work. However, I haven’t been over 8 in 2 years, so thinking that I could be at 10+ makes me ecstatic. I can live at this level, but definitely not living my ‘best life’. No complaints here – but let me know if you have more to share and BEST of luck.

[Kenan White]

Hello – I’m very interested in anyone’s experience – I’ve been waiting for approval but since it’s only been over a month I’m assuming that no one is able to comment yet. I’ve done a lot of research and it seems promising for low risk – transfusion dependent patients –

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